Frontal fibrosing alopecia

[Fluffychops21]

Hi,
Anyone else on here with this condition?
Have you had any treatment that’s worked?
Looking forward to hearing from you 🤞

Has anyone had success with the malaria tablets? I refused them a few years back, so the derm discharged me, saying he couldn't offer anything else. I now feel I should be doing something at least

Is anyone still reading this thread? I am 46 and have been having some hair loss for 4 years now. I was diagnosed with Frontal Fibrosis Alopecia and Androgenic one (two co-existing conditions). I have been referred to the NHS dermatologist, but she only saw me in 8 months time... Before that, I went to see the private dermatologist, who just said that I had Androgenic Alopecia (they did not offer me hair biopsy test). At least, they prescribed me oral Minoxidil that I asked for and Spironalactone. I am currently taking iron pills, oral Minoxidil, and Finasteride through the private hair clinic. I have also started taking Hydroxychloroquine one week ago through the NHS dermatologist. One of its side effects is a ... hair loss 😭 So, I need to wait and see what happens.

I am already prepare myself mentally for wearing a wig in the future. I only lasted for so long (and still last) because my hair has always been very thick to begin with and I had lots of hair and still have a lot, but it becomes more visible now at the front, more difficult to hide. I also look younger than my age and there were/are no bald people amongst my relatives. My grandparents were 80 when they died and still had their hair, my parents are in their 70s and still have lots of hair, my uncles and aunts have hair... I cannot understand why it happened to me?! It came out of nowhere! It's horrible! I am trying to come to terms with wearing a wig in the future, but it is so difficult to accept it! I am also afraid that this new antimalarial medication that I started is making me feel worse... I lost quite a lot of hair in the shower recently and my scalp itching is not improving... So far, I had 5 of these pills (200mg daily).

@tabs668you are doing all you can.
Oral minoxidil causes weight gain so in addition to hair loss I have weight on. Its just awful at times. My pride in my looks is gone. I hate the mirror. I try and mitigate my feelings with stylish clothes and love face tan to try and hide the white patches of skin at the hairline which " takes" only sometimes. Its absolutely awful it really is BUT everyone who uses a topper/ wigs wish they did it sooner. I have thick curly hair so I know no one notices YET. My Dh maintains he will tell me the minute it's noticeable and my fab hairdresser will too. I was getting my hair done at home anyway by a friend so really happy I'm not in a salon. Things could be worse. So many with bad cancer etc. I'm 51 yrs old. Oh was in NYC last week on the big bus tour so when it's windy you are conscious but no one knows me there so tried not to care. One of the worst symptoms for me is itch. I'm on high dose telfast and use an aveeno anti itch cream. Also I was on doxycycline last year and felt in the sun my skin was on fire ( v v sun sensitive. I said it to my fab Dermatologist who took.me straight off it. There is no way I'm denying my kids a summer holiday because of this crap situation I am in. Its a cross I will have to bear for the rest of my life and it's just awful ( I'm so sorry I'm so negative today- sometimes days you just can't help it ) wishing you the very best ❤️